autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

Brené Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.

 

advocacy · autism · Down syndrome · special needs parenting · Uncategorized

At The Risk of Sounding Like a Jerk. . .

Can I confess some mixed feelings?

A little backstory: Alex brought home a flyer for the Night to Shine”, an event created by the Tim Tebow foundation to provide a formal dance night for people with disabilities.

It’s probably no surprise if you have read my previous posts to find out that I’m prone to over thinking, and this is a prime example of that. But pardon me for working it out here with you, especially if I end up with pie on my face.

Of course, Alex wants to go to the Night To Shine. An evening out with his friends to get dressed up and dance is total fun for him.

I don’t want to not let him go. I mean, what parent wants to deny a child a fun time. And if you know anything about Alex, when he’s having fun it’s beautiful and contagious.

Yet, I’m struggling to get past the yucky feel of the thing.

By yucky I mean it feels like a Cinderella story where for one night everyone has fun playing pretend, and then when the clock strikes midnight the shoe falls off, the coach turns back into a pumpkin and everything goes back to how it was in the first place.

When the boys were younger we signed them up for a football event called Victory Day, where the participants took the field with a local high school football team and were handed the ball while the high school players gave academy award winning performances pretending to tackle the disabled person who eventually succeeds in running the touchdown. The whole thing was contrived, in a good natured way, but what rubbed me wrong and aged badly, was Ben’s touchdown run.

Ben doesn’t follow anybody’s playbook but his own, and rather than running a touchdown, Ben fancied himself a defensive tackle. What Ben wanted was to take down the ball carrier. Ben’s chance to play football with the bug guys became a comedy of errors, because Ben wasn’t about to run the ball, and instead, did his level best to get in a few good tackles. They ended up carrying Ben over the goal line in order to get him off the field with less than a full hour of time off the play clock. Long story short, the day left an aftertaste, one that leaves me wondering what the volunteer time, money and effort is really about.

I can’t fault the players for making every attempt to follow through on what they were supposed to do, but what, in retrospect, seems off is that the people the day was supposed to be for had no voice in how their one shot on the field went. They were given a ball and expected to do what was planned for them, rather than being offered a say in what to do.

Which leads me to wonder if when these things are planned, are there people with disabilities on the committees? On the foundation staff or board? Or is this something that typical functioning people are doing for people with disabilities?

Let’s walk this back. If you’re a woman, do you want all men creating and enacting their vision of what you want? If you’re an introvert do you want a committee of extroverts deciding what introverts want. It can go on and on with various people groups, but suffice it to say, every people group deserves representation when plans are made, rather than having plans made for them, and people with disabilities deserve that no less than any other group.

Looking into the Tim Tebow Foundation I am not easily able to ascertain if any board or staff members have disabilities, but I’m fixing to find out, as well as checking the local planning groups. Representation matters. Self-determination matters. It’s fine to serve, but even better to include and involve, while listening.

For now, I think Alex will attend, but not without reservations on my part. I’ve emailed the foundation and am eagerly awaiting a response on how involved people with disabilities are at the planning level. Stay tuned.

advocacy · Down syndrome · Uncategorized

Down Syndrome Awareness is Not Just For Little Ones

When my son Alex was first born, I felt compelled to make sure everyone in our lives knew just how precious he was. I enjoyed great success, but in retrospect, Alex made it easy. Babies with Down syndrome are often adorable, and Alex was no exception. He made my advocacy job easy, and after awhile, considering my success, I relaxed a bit on the advocacy. There were IEP meetings, and plenty of parenting tasks to take up my time, so campaigning for the acceptance he already enjoyed seemed somewhat superfluous.

Fast forward 16 years, and Alex has hairy legs and armpits, a deep voice, and is almost my height. As any mother does, I still think he’s the most spectacular child in the world, and as cute as ever. However, when you add in significant speech and social skills delays, compounded by the already interesting early teen phase, he often doesn’t get the warm public reception he once did.

But as Alex’s mom, I want to tell you that he is the most thoughtful young man I know. Every single day he asks young man I know. Every single day he asks me how my day was, and even actually listens to my answer. He loves nothing more than cooking, except eating, and will cheerfully lend a hand to anyone who asks.

Alex is a gamer extraordinaire, and can beat just about everyone he knows in almost any game. He can throw an awesome spiral with a football, and hit a home run in baseball. (He gets his athleticism from his father, not me.)

Alex deserves awareness too, just as much as the older teens and adults do. People with Down syndrome are diverse, interesting and valuable as members of our communities. They have desires and interests, and live full, active, productive lives. More and more they are branching out into careers as actors, models, business owners, and contributing their considerable gifts the the communities where they reside, and their communities are better for it.

autism · Down syndrome · special needs parenting

How Summer Changes When You Have Kids With High Needs

Summer break isn’t my favorite.

I used to love it. We had a camper and several times each summer our family would visit different parks around the state, enjoying nature and time together. It was idyllic, and this, or something similar is what summer means to many families.

If I had to choose just one word for what has changed, that word would be vigilance.

Our son, Ben, has high needs. Yes, he has Down syndrome, but so does Alex, there’s a difference. Add in autism, with some hefty medical and psychiatric diagnoses, and time with him requires constant vigilance. Like bringing super busy and fearless two-year-old twins to the Grand Canyon overlook without a rail kind of vigilance. And that is just outside at our home, when we go anywhere else our efforts are multiplied.

This is why:

  1. Our child doesn’t have discernment. He occupies a twelve-year-old body, but his mind is much like that of a toddler. Dangers like busy roads, campfires and water mean nothing to him, and we have no way to explain it to him.
  2. He doesn’t learn from experience. Family members have been flummoxed to see him run into the water until it’s over his head, then stand there until someone rescues him. After coming out coughing and hacking, he will turn around and do it again. And again. And again. He will even laugh while doing it because he gets attention for it. He has yet to grow out of it, and I have my doubts that he will. Any time spent near anything dangerous is similar.
  3. He doesn’t respond to punishment of any sort. Neither in school nor at home. We have yet to find a way to create a consequence for his actions which discourages him from doing the same in the future, and that is with social workers and psychologists using their best tools. (No, this isn’t an invitation for you to share your idea with us).
  4. He melts down. Too much stimulation, too many “no’s” or transitions, or just any change of setting are triggers for meltdowns. Anyone with a toddler knows what it looks like, flopping on the floor, screaming, kicking, hitting, biting and more, with murderous rage. But this is a twelve-year-old. He weighs about 100 pounds now, and he isn’t getting any smaller.
  5. He has discovered that taking his clothes off gets a reaction, and he loves reactions. Any time spent in public is taking the risk of public nudity.
  6. It’s a break from the structure and routine that keeps him together. School is a setting with professionals who work with him on these and many other things. He craves the predictability, and reproducing it at home doesn’t and won’t work, and goes against the fluidity that makes summer fun for the other kids.

We aren’t alone either. You may not see them, chances are they are holed up at home being selective about going out, but there are many families like ours, struggling just to visit the lake for an hour, or stop at the ice cream store for a cone on a hot evening. We know we need to get our kids into the community, but we do it judiciously, because so often it ends in frustrated exhaustion and tears. We live this year-round, but during the school year, our children have the structure and stability of professionals during the day, and we meet them refreshed and ready in the evening. Those with school during the summer have less of it, and the free time feels chaotic to them, and their families both.

Why do I bother with telling you this?

Because not very many people will. We left church, one with a special needs ministry because our son’s behavior and medical needs were too much for the volunteers. We no longer attend the special needs family camp we tried, because his needs were too much for the volunteers. We are the outsiders, the resources there are don’t fit for us, and we struggle alone. And I think it needs to be said.

 

Down syndrome · parenting · special needs parenting

Making Peace With Our Question Mark

When you have a child, they say your heart walks around outside your body, and I couldn’t agree more. All of the hopes and dreams of another person somehow mean as much to me as my own ever have.

We tend to think we will know what parenthood looks like going in. It starts with midnight feeds and changing diapers and blossoms into milestones. Before you know it there’s an independent human being making decisions and taking on the world. Supposedly, if you do a halfway decent job of it, the child becomes successful and lives a good life. But the reality is seldom so cut and dried.

When you have a baby with a developmental disability, you get advance notice that children don’t come with a recipe, guaranteed to come out as expected as long as you follow the directions properly. You know how it’s supposed to go: play sports, do well in school, go to a good college, find a wonderful spouse and enter a great career. Ensure good values and belief system of your leaning. Stick a toothpick in it to ensure it’s baked through and voila!

The recipe is punctuated with random question marks, some more than others, but we don’t understand them, don’t like them, and do our best to ignore them or stomp them into the ground.

Our son Alex is 16 now (hokey Pete, how did that happen?) and we aren’t sure if or how or when college or trade school will happen. He has career aspirations, and we work together with his school team to make step by step goals towards them. He is thoughtful and tender hearted, so we hope for him to find true love. Independence is still millions of baby steps away, and not a clear picture yet.

The recipe card most people cling to is the length of a novel for us, with many revisions and impromptu modifications. Our question marks are neither random nor infrequent. They started immediately and they’re everywhere. Early on we looked question marks straight in the eyes, then made it a full partner in the effort instead of something we try to avoid or ignore. We embrace the questions because we recognize that nothing is given or assumed for anyone, but especially so when parenting children who are not neurotypical.

Once you acknowledge the question mark, you can make peace with it, not only on behalf of your child, but in general. There’s a certain comfort in saying aloud that results are not always proportional to the effort and plans , no matter how brilliantly derived, unravel here and there. Once it’s on the table, the question mark isn’t so terrifying anymore, and it frees you up to focus on the process without clinging so desperately to results.

In so doing we find the magic in the process. And oh boy do we know about magic around here.

autism · Down syndrome

What is Autism and Why Does It Matter to You?

Today is World Autism Day. There are specific activities involved, such as wearing blue, but beyond that, why should you, the average internet surfer, give two hoots about autism awareness and acceptance? Why would it matter to you?

The diagnostic criteria for Autism Spectrum Disorder (ASD) specify that to be diagnosed a person has to have social deficits. Added to this are the criteria regarding sensory processing and rigidity of behavior.

In plain English, what this means that approximately 1 in 68 people have significant social deficits and sensory processing difficulties to be considered Autistic. The disorder occurs on a spectrum from mild to moderate to severe.

Because it’s a spectrum of presentations, you might see one person with Autism who is highly intelligent with more social challenges and rigid behavior and another who doesn’t speak at all, has limited to no social skills and constant sensory avoiding or stimulating activities (or a combination of avoiding and stimulating), and both of them are considered Autistic.

No two people with Autism are alike. When you know a person who is on the Autism Spectrum, you might think you have a pretty good idea of what Autism is, but really, you only understand that person. The next person you meet with Autism might have very some different personality traits, behaviors and social skills.

My son, Ben lines up his cars all the time, lining items up is a common Autistic behavior.

This is where awareness and acceptance come into play:

  • If someone says they have Autism, believe them. Just because they aren’t like someone else you know with Autism doesn’t mean that they don’t actually have it. To get an Autism diagnosis, a person goes through clearly defined standardized testing conducted by a qualified clinician, and chances are that you are not qualified to decide if the assessment was correct.
  • Be aware, when you’re in public that you might encounter an Autistic person. If someone you meet seems to have unusual social conduct, give them the benefit of the doubt and accept them as is.
  • Autism meltdowns are very real and very challenging. Don’t judge the person melting down or the people with them, just give them space and a smile.
  • Keep advice to yourself. Sure, your cousin’s neighbor has Autism and a gluten free diet helped them and your coworker calms his Autistic son with essential oils, but those are two different people, and what works for them isn’t a magic fix for all things Autism related. Most people with Autism and their families have accrued great resources and have tried many things, so chances are good that your suggestion isn’t new to them.
  • They might be using medications, natural remedies, or therapies to manage their Autism, and whatever they’re doing is between them and the professionals they trust to give them direction, it’s not for you to judge their approach.
  • Just like anyone, Autistic people (and their families) want to be accepted. If you want to be helpful, read up on Autism and be a safe and accepting person. It’s really the best way to help. The Autism Society is a great place to start if you want more information.
  • As a parent of a child with Autism, I have been both chastised and blessed by strangers in public, but mostly just ignored. Honestly, being ignored is probably the easiest for us, so don’t feel like you have to help someone who is struggling in public in order to be an accepting ally.

What is really helpful, is knowing that my son is accepted, just as he is. And anyone can do that.